Welcome. I was inspired to write this blog while pregnant with my son, Josiah. At 18 weeks gestation, Josiah was diagnosed with Down Syndrome. He had open heart surgery at 3 months and has had RSV twice. He is now 21 months old. He and his two older brothers amaze us everyday. Josiah was not a mistake, nor is he a regret. He is a miracle and the light of our lives. We share with you this beautiful life we have been blessed with.

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Tuesday, June 5, 2012

Friday's Facts 060112: A New Parent's Checklist

This is a great checklist I found for new parents of a child with Down Syndrome. It was written for parents living in the Pennsylvania area but has been edited, here, for people living in the Massachusetts area.

Newborn checklist

1. Contact the Down Syndrome Clinic at Boston Children's Hospital (857-218-4329) or Massachusetts General Hospital (617-643-8912).

4. Contact Early Intervention at 1-800-905-TIES or http://www.massfamilyties.org. EI is a statewide, integrated, developmental service available to all families of children between birth and three years of age. EI provides family-centered services that facilitate the developmental progress of children.
5. Apply for Social Security Income (1-800-772-1213) & Mass Health/Medicare (1-888-665-9993 or http://www.masshealth.gov).

SSI is a federal program of the Social Security Administration that provides monthly cash benefits and automatic MassHealth coverage for a child with special medical needs. Families with low to moderate income and limited resources may be eligible for SSI. Families whose income or resources exceed the limits of MassHealth Standard may be eligible for Commonhealth. Commonhealth is a state program that may charge a premium for MassHealth through a sliding fee based on income and family size.

6. Take a copy of the following to your pediatrician:
1. The Down Syndrome Health care Guidelines (available at http://www.ndss.org)
2. Contact info for the DS Clinic at BCH or MG
3. Growth charts for children with Down Syndrome (available at http://www.ndss.org)

3-month checklist

1. Schedule an echocardiogram with a pediatric cardiologist.Babies with Down syndrome are sometimes born with heart defects. It is important to identify any cardiac issues as soon as possible so treatment options can be discussed.All babies with Down syndrome should have an echocardiogram by 3 months of age.
2. Schedule an appointment with a pediatric audiologist.The ability to hear affects the ability to speak, so it is important to have your baby’s hearing checked.Your child should receive a newborn hearing screen with an audiologist by 3 months of age (this is in addition to the newborn hearing screen that is routinely done before leaving the hospital). All babies should see an audiologist every 6 months until age 3 and then yearly.
3. Schedule an appointment with a pediatric ophthalmologist.All babies with Down syndrome should receive an ophthalmological evaluation by 6 months of age and then yearly.
4. Schedule a thyroid function test.Children with Down syndrome are at a higher risk of having abnormal thyroid levels, so it is important that your child’s thyroid levels be checked regularly.All babies with Down syndrome should have their thyroid levels tested at birth, at 6 months of age, at 1 year of age, and then yearly.